Brisan and Parker Stults | Living with Niemann-Pick Type C

Archive for the ‘Jennifer’ Category

Updated Family Photos

Isn't Duncan's face totally historical? He was being a little bugger all night not wanting to take pictures but instead play with Wendy's son. That is ok though… we were able to get a few good ones in here. Also he doesn't get that kind of action at home although he has two older brothers. We recently had some new photos taken by our good friend Wendy. She is so kind to do this for us!

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A tad bit behind on getting this posted up but wanted to share the link to the article on the 2nd half of the story the Grain Valley Pointe Newspaper written by Chris Fischer.

We have been very much appreciative of them taking time to share with the public at large about Niemann-Pick Type C disease. It helps spread the word!

Read More Here: http://go-tiny.com/StultsFamily2

The Grain Valley Pointe Newspaper did a follow up story on our family since they first visited with us back in 2009. Chris Fischer is doing a 2 part story on the follow up.

We are very thankful for their time to spread the awareness of a horrible disease like Niemann-Pick Type C.

Here is the article: http://www.grainvalleypointe.com/?p=4762

Hi all, I know normally I am not the one that blogs but today I am. As I am sitting here in this blizzard watching the snow fall, I am thinking about Brisan and Parker. I often think about what they would be like if NPC was not taking them away from us. Would they be begging me to go outside and play in the snow like Duncan? Would they be watching the TV to see if school is canceled tomorrow? While Duncan is excited about the snow and spending time with Mommy and Daddy, Brisan and Parker really have no idea. But that is just our reality. They don’t even know what snow is anymore and don’t say Mommy or Daddy and have not for a long time.

Brisan and Parker Laughing

I find myself having a hard time dealing with this “reality”. I know in my head that everything happens for a bigger picture but when you are in the forest it is hard to see anything but the tree in front of you. But when you take a step back that is when you can see the whole forest and the bigger picture. I was once told that there is light at the end of the tunnel and it is not a train.

As I have been talking with some friends on facebook, I am slowly starting to learn thatI have to ask for help when I need help, I have to allow myself to feel these feelings and I have to rely on those that have sadly gone before me. None of those are easy for me to do. I am a very planned and organizing person. But let’s face it, Niemann-Pick Type C has a plan of its own and is not organized like I wish it was.

On a good note, we have a new member of the family, Jenna. Jenna is our new personal health aid that is working with the boys. I have to say that she is great with the boys and she loves them as her own. That is exactly what we need. She is always asking us questions, wanting to learn more and more about them, their story and NPC. More that I can say for 98% of the ones in the past.

While I am very sad at our crazy daily life, it for some reason makes me want to fight even harder. This is where we need help. We know that we can’t fight this battle alone. We just can’t. We need your help, awareness is key. If we can save one other family from having to even know what NPC looks like then I would feel successful. I have heard several times lately that I am NOT Super Woman and Mike is not SuperMan. (That also doesn't mean I wont try though.) There has to be some way to make Brisan and Parker’s life better than it is already and also find a cure/ treatment for this monster. That being said, I think we may do some finger painting today with all three boys.

I’ll let you know how it goes.

Last note, “The King has one more move!” I don’t know what it is but I have to trust in him and know that it is all for His glory and Brisan and Parker will and are making adifference in this fight against NPC!

Well maybe not completely! It has been of course a few weeks since we last updated every one. On 5/24/10 I unexpectedly was informed that my position at work was eliminated. The term “coming out of left field” doesn't even begin to describe the situation. The company had to make some tough decisions due to financial reasons. I am working hard to find employment else where. We hope that it doesn't take long because essentially they only offered me my last check. Talk about not knowing what will happen….We know God will provide but it is scary either way. Along with my traditional resume I created www.Hire.MichaelStults.com. It is something I am using with my marketing game plan to find a job!

For Memorial day weekend we went to Family Camp with Pleasant Valley Baptist Church. We are very thankful we had the pleasure of attending. It was difficult at times because Brisan and Parker unintentionally do get hurt while playing with their peers. With the reduced coordination skills it makes it more difficult for them requiring a ton more supervision. It was nice to get away…get away from life for a few minutes even though we're consistently reminded with the boys the differences they have between their peers.

Brisan, Parker, and Duncan have been OK. As you see from the pictures below Parker has been fondling his butt as if it was his own little worry stone. This is his new thing. The boys started EYS (extended school year) last Thursday. Jennifer also visited Leggit Trails in Blue Springs to see how that school fit the boy's needs or at least Brisan's for now. Jennifer felt after her visit that they have all the accommodations that we would need to properly provided full services for Brisan.

Thank you to everyone that has kept our family in your prayers. We are very thankful and always want everyone to know this. We all have lives and problems that arise in our worlds but for you to take time out of your day to lift our family up in prayer is very special. Please don't forget about the Car Wash Fundraiser for the boys on June 26th. Details Brisan and Parker Car Wash Fundraiser.

Did we say how nice it was to be actually home all week and not traveling? This past Monday Brisan was able to access his port-a-cath for the first time since surgery on April 7, 2010. It was a calm week besides all the work Jennifer put into getting ready for the IEP meeting for Brisan, Parker, and Duncan on Friday the 7th.

Brisan's first usage of his port-a-cath

The meeting overall went well. Since Brisan is moving into Kindergarten next year, we needed to have the discussion on what was next for him. It was an emotionally charged atmosphere at times. We all know with Niemann-Pick Type C Disease that the outcome isn't pretty with the grim truth that there might not be an abundance of schools years left.  As a family we had many concerns if GV school district could accommodate us.

Brisan will essentially be going from 8:30 to noon, which isn't much different from now. He will participate in the regular class with his peers and also eat lunch with them. They agreed to hire an LPN for Brisan and starting Monday they will have an additional Para in the class for both of them for the remainder of the school year and beyond. Next year Brisan and Parker will both be in different buildings which poses a challenge. It probably is unlikely they will hire two LPN's.

The IEP isn't final until they formally write it up and give us our 10 days to review. We also spoke about Duncan starting next January. Parker's IEP will be talked about in this upcoming week.

Overall the stark truth was very sad and disheartening as we listened to all his inabilities. This is the time reality sets in and gives you a smack across the cheek. Just over the course of a year Brisan has regressed in a lot of his abilities. For others who are outside our home it might be hard to completely see this digression.

We will write more later! Honestly there is way too much to write about. If you have any questions please feel free to email Jennifer or myself .

Below are some pictures of Brisan graduating preschool on Thursday May 6, 2010.